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newly diagnosed and feeling symptoms. i think

Hi everyone. This is my first post as I’m new on here. I was diagnosed with ms 2 days ago after suffering optic neuritis and having an MRI brain scan. I got rushed through pretty quick taking only 3 weeks from getting double vision to being diagnosed. I had numbness in my legs which started about 6 months ago and I twitch a lot especially at night’s. Since my diagnosis I have been having aches and pains in my legs and have terrible neck ache. To be honest I’ve had aches for a while and am a little confused as if there down to me being unfit. My neck however seems to be recent. I don’t want to mention it to my wife or doctor because I feel like I’ve been diagnosed and they will think I’m being a bit of a martyr. I’ve not opened up to my wife, we are really close but she is upset and I don’t want her to think I’m scared of what’s to come, my mother has ms and is not in a good way at all hence me being anxious.

Hi Adam

I can perfectly understand why you’re anxious as you have seen your mother suffer with MS. However, one thing about MS is that it is different for every sufferer. Each sufferer has different symptoms, different progression and different mobility. Your disease will not follow the same course as your mother’s.

It can be difficult to open up to your loved ones as they worry about us and do not understand how we feel for obvious reasons. Please know that everyone on here understands where you are coming from and you can come to us whenever you need to.

Please see your GP if you have new symptoms as he/she may be able to give you meds to ease the problem - probably in the form of neuropathic painkillers. The neck ache may well be L’Hermitte’s sign, it is worth googling if you haven’t heard this before.

Take care and thinking of you,

Teresa xx

Hiya and sorry about your diagnosis(dx).

I too am new to this,also had two bouts of optic neuritis and my mom also had ms. Others will be on soon with far better knowledge and advise for you.I just wanted to say welcome to this site and as you will see you can ask anything and people here will know what you mean.

I do think its important to mention all the pains,aches etc to your gp as there are some excellent medications for the various types of pains that your over the counter things wont touch.

I dont practice what I preach as my husband saw the state my mom was in towards the end.but talking to your wife openly and honestly right from the start is important. Ms is vastly different in how it manifests itself and you will be wildly different to your mom.

The ms society has excellent literature which you can download,but remember you will not get everything that can happen,everyone is different

Anyway welcome aboard.

Pip 

Thanks Teresa and pip. I know its important to talk to my wife I just hate the thought of her worrying too. I really appreciate your support and comments. Thankyou.

Hi Adam and welcome to the site happy2

To reiterate what Pip and Teresa have said - your feeling so anxious is completely understandable. MS is very much a personal illness - it affects us all in different ways. What may affect one person may never affect another.

Also, it's only been two days since you received your dx - give yourself a bit of time to adjust to the news, it's a lot for anyone to cope with.

When you're ready there are lots of publications that both yourself and your wife may find useful. Try not to shut down and not talk about it - tell your wife how you're feeling. Sit down and have a chat about it. When you're ready.

The one thing I would strongly suggest though, is to speak with your neuro or nurse - your GP if necessary - about medications for your ongoing symptoms. There are lots available and there is no need to suffer in silence - the vast majority of us are popping one thing or another and it sure helps take the edge off things!!

It's also worth finding out whether you've been assigned an ms nurse too - they're worth they're weight in gold and can help in lots of ways!!

If dmd's have been mentioned to you then it's definitely worth checking out the ms decisions website. But the main thing is to get any pain under control first and get your head round things. Take your time and remember we're here if you need us happy2

Debbie xx

 

 

Hi Adam, and welcome to the site happy2

 

Great advice from the others. Couple of things I'd like to stress:


- Please see your GP about your symptoms. There are loads of different meds available these days to help our symptoms so there is no reason to just live with pain or other difficult symptoms. (If you have the contact details for your MS nurse, please contact her/him - they will advise what meds to ask the GP for if the GP doesn't know.)

 

- Please speak to your wife. I bet she is just as scared and just as worried as you. I also bet that she feels like she can't talk to you about it because she doesn't want to make you feel worse. In other words - you are both bottling everything up because you don't want to worry the other!

 

It takes a while to get over the diagnosis, but you'll get there. Give yourself time; take it one step at a time. Life may be different, but it can still be good.

 

Karen x

thanks again to you all. i called my doctors today for an appointment so i will go and talk to him in a few weeks, i haven't had an appointment through from the neuro yet so ill just wait for that one. im touched though of how kind people are on here, kinda gives me faith that compassion still exists in the human race.

Hello Adam and welcome,

The advise the others have given you is the best, you could always ring your neuro's sec' to see if you can find out how long you will have to wait to see them. At least then you have somethng to aim for.

I to had difficulty in speaking to my OH about MS as I didn't want to upset him so I did it step by step, a little at a time. Even now he doesn't quite follow it all but he gets the general idea. Keep positive and remember we're all here for you.

Janet

Hi Adam,
Thanks for your post on my thread, I replied before I read this so sorry if it was a little patronising. As you know I finally got labelled yesterday. It wasn’t a shock and so we were sort of prepared for it.
There was one thing the ms nurse said she wanted me to attend, it’s a “New to MS” course and it’s on in the Autumn. I live in the NW so it will probably be in Liverpool. She thinks it will help me to communicate with my OH. He can attend too and she thinks it will help him as much as me. Maybe there is a similar event where you live?
My father in law is a retired gp and never liked to offer us advise or medical support to our kids as he couldn’t be impartial, your wife sees patients but you are her husband and it’s probably difficult for her too.
My ms is nothing like my grandmothers, but that doesn’t stop the worry.
Thinking of you.
Chis

Hi Adam,
Thanks for your post on my thread, I replied before I read this so sorry if it was a little patronising. As you know I finally got labelled yesterday. It wasn’t a shock and so we were sort of prepared for it.
There was one thing the ms nurse said she wanted me to attend, it’s a “New to MS” course and it’s on in the Autumn. I live in the NW so it will probably be in Liverpool. She thinks it will help me to communicate with my OH. He can attend too and she thinks it will help him as much as me. Maybe there is a similar event where you live?
My father in law is a retired gp and never liked to offer us advise or medical support to our kids as he couldn’t be impartial, your wife sees patients but you are her husband and it’s probably difficult for her too.
My ms is nothing like my grandmothers, but that doesn’t stop the worry.
Thinking of you.
Chis

Thanks Chris. I talked to my wife earlier and tried to explain things to her. I know I don’t feel right and that’s hard to put into words when I don’t quite understand it myself. I hope things go well in Liverpool for you and I will look into if there is a course near me. Thanks again.

Hi Adam,

Explaining to others how we feel is not always the easiest of tasks - I've found it so hard at times. So as well as the course that Chris has suggested it might also pay you to have a look at the publications list on this site ( click on 'what is ms' then a new menu comes up).

The MS Trust is another excellent site and worth checking out. The publications cover pretty much everything related to ms and can either be downloaded, read online or even ordered to receive by post - handy for family & friends to peruse!

I don't know about you but sometimes I find it better to have a book or leaflet that I can read at my leisure and be able to refer back too and I know that my nearest & dearest find them handy too. Reading about ms in black and white has definitely given them a better grasp on how I feel and how the symptoms can affect me. Might be worth a shot?

Debbie xx

 

Thanks Debbie. I bought a book all about ms from eBay so I can read it and for my wife to read too. I am looking forward to getting my appointment with my neuro so I can get answers to some questions I have. Hopefully it won’t take too long. Thanks for the advise. X

Please be careful with books - they are not all written by neurologists or even people who actually know all that much about MS and very often are more about selling their own ideas. The booklets on here and on the MS Trust are free to order or download and are completely objective.

Kx